Diverticulitis and persistent pain
I was diagnosed with diverticulitis almost 2-years ago. Prior to diagnosis, I started feeling better rather quickly but went to the doctor as the pain was unusual. I was placed on Cipro and Flagyl. I started “googling” my symptoms (big mistake) and read about the liquid diet and since the literature that came with my medication did not indicate the necessity for food, I went on a liquid diet. Within 2-days (over the weekend) a different and peculiar pain started in my upper abdomen so I admitted myself to the ER. I was discharged 5-days later after no food and IV fluids/Cipro/Flagyl and diagnosed with a micro perforation and given 10-days more of antibiotics. ER suggested I needed a colectomy and I was referred to a gastroenterologist (GE). The GE believed that I had ulcers and after an endoscopy, had no findings and recommended that I return in 3-years even though the upper abdominal pain never receded. The GE recommended a high fiber diet and 2-months later I had another diverticulitis flare-up. I sought help with another highly reputable university hospital and submitted to tests for SIBO, a gastric emptying study, radiation MRI, HIDA scan, CT scans and a colonoscopy. All of the tests came back negative but the emptying study showed rapid emptying (which was not considered indicative of my symptoms) and the colonoscopy showed severe inflammation and they believed I had Crohn’s disease. The test for Crohn’s came back negative and it was recommended that I increase my fiber (even more so) and a colectomy was not recommended.
I read about a low-residue diet (which a nutritionist I consulted hadn’t heard of) and started eliminating fruits/vegetables and whole grains. I also previously tried numerous other diets (FODMAP, specific residue, etc.) without success but the low-residue helped. 8-months later, I had another colonoscopy and the inflammation was gone. University medical recommended I come back in 10-years even though I’m in my fifties. Now, after several months on a low-residue diet (my diet prior to all of this was about 80% fruits and vegetables) I still have the exact same pain that I had when I first went to the ER and I saw my local GE (that believed I had ulcers) yesterday and he told me I have scarring in my colon from the diverticulitis and that the pain would never go away
Perhaps, his conclusion about my pain is correct but simply by tracking the onset of my symptoms and what has happened to date, my sense is that this has all likely resulted from the antibiotics and a cascade of poor medical care. I should also note that I have been told that I have IBS even though I have had very little difficulty with diarrhea and constipation (especially after the low-residue diet) and I don’t think my symptoms are the result of stress as much as my stress is a result of my symptoms and the medical care I’ve received. Does anyone have a similar experience and, hopefully, has anyone found a resolution or have suggestions?
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I should also add that I would appreciate any honest feedback. I've often thought that the pain I'm having is all in my head which seems somewhat realistic considering my frustration with the medical care system. Nevertheless, my symptoms just don't seem to fit and it does seem rather dismissive to regard this as IBS or conclude that I'm simply stressed.
I think the care is lacking for GI issues. You seemed to have managed much more tests than I've ever been offered. I always get ordered Barium lower GI series. I ended up with Redundant bowel from diverticulum scar tissue and ended up having to have bowel resection of sigmoid